After radical brain surgery, Mission Viejo man beats the odds

MISSION VIEJO – Jonathan Redmond is flanked by firefighters in front of Engine No. 9, chatting with them about the day’s calls. “Did you respond to a chest pain?” he says. “I had my radio scanner on today to see if you were busy.”

Redmond, in a yellow turnout coat and gym shorts he pulled on earlier using only his left hand, is visiting the Orange County Fire Authority station as he has regularly for the past five years, part of his neuropsychology therapy. Firefighting is his dream job, but it is unattainable. Just being able to step into the fire engine for rides required weeks of climbing stairs to strengthen Redmond’s legs.

His limitations notwithstanding, Redmond refuses to resign himself to the unexceptional life some expected for him. Armed with a diploma, the first ever earned through Capistrano Unified School District’s special education program for young adults, Redmond is intent on working an office job for the Fire Authority.

“He has a great attitude,” firefighter Mike Curtis said. “He was telling us a story once about someone giving him a hard time, and he said something like, ‘How about I take you down to Mission (Hospital) and have half of your brain taken out?’”

BLESSED WITH A BABY BOY

Julie Redmond grew up believing having a child would be impossible. An infection had caused her kidneys to fail by the time she was 18. But a transplant in 1986 changed that for her and her husband, Mike.

Five years later, Jonathan was born, weighing a healthy 8 pounds, 2 ounces.

“When we first brought him home, we would just sit there and stare at him,” Julie said. “I just felt I was so blessed to have this beautiful baby boy.”

Their son was 10 days old when the first seizure jolted his tiny body. “He just got tight,” Mike said. “The muscles in his body drew in a way that it was not ... normal.”

An MRI revealed the left side of Jonathan’s brain was bigger than the right, an unusual condition called hemimegalencephaly. The neurons in the enlarged left hemisphere had developed and organized abnormally and were misfiring, inducing epileptic fits that ranged from spontaneous, creepy laughter to erratic convulsions.

Sometimes drugs stopped the seizures. Mostly, though, they didn’t. Intermittently for more than two years, Jonathan would seize up to 20 hours a day. “He would seize, eat and sleep,” Julie said.

By the time Jonathan was admitted to UCLA Medical Center in June 1994, at 2 years, 7 months, he could only speak 20 words, Julie said.

“‘Momma,’ ‘Dadda,’ ‘up,’ ‘down,’ ‘more,’” she said. His tongue was so weak he could only eat baby food. He could not crawl or walk.

A RADICAL CURE

“You’re talking about taking half my baby’s brain out?” Julie remembered thinking when UCLA specialists proposed a hemispherectomy – a rare procedure in which the side of the brain where seizures originate is cut out or disconnected.

Where drugs failed, the surgery offered about a 75 percent chance of completely halting the seizures. And, because Jonathan was still young, it was also possible his healthy right hemisphere would take over for the left hemisphere.

If the malformed side were left intact, “the hemisphere that appeared normal would over time become damaged” and the child would become severely handicapped, said retired pediatric surgeon Warwick Peacock, who performed Jonathan’s hemispherectomy and 96 others.

Still, the prognosis was uncertain. “Not all patients progress to the same degree,” said Amy Brooks-Kayal, vice president of the American Epilepsy Society.

There were serious risks, too. Without the left hemisphere, the right side of Jonathan’s body would be “profoundly weak.” He would lose his peripheral vision and the fine motor movements in his right hand and foot. At UCLA, one patient has died in surgery from excessive blood loss.

Feeling as though they had run out of options, the Redmonds consented.

On Sept. 2, 1994, Peacock operated on Jonathan for nine hours, removing nearly the entire left half of his brain – including the areas that control reasoning, speech perception and problem-solving. The remaining tissue was disconnected.

NO LOOKING BACK

“We never went down the road of ‘What could have happened?’” Julie said. “We just plowed ahead.”

Therapies of all kinds, though mostly physical and speech at first, were part of daily life. Jonathan had to learn to stand and sit on his own. When he did, he tripped a lot and bumped into passers-by.

Mike remembers watching Jonathan draw a picture. “On one side it was all these colors … and then in one corner of the picture he drew a big black spot, and I realized, ‘This is what Jonathan sees.’”

“We did horseback riding until the horse pooped, and he decided he didn’t like that,” Mike said.

Simple tasks like bathing on his own – by using his right hand as a shelf for a wash rag – had to be mapped out in advance. Learning to ride a tricycle required straps and a seat belt. Today, even after surgeries on his right arm, leg and foot, Jonathan wears a leg brace and will ask for help opening Gatorade bottles.

“We tell him every day, ‘Hey dude, you only have half a brain, but you can do things,’” Mike said.

In fifth grade, Jonathan was stuck academically. The Redmonds hired a bullish pediatric speech language pathologist, JoQueta Handy, to help him progress.

By the district’s assessment, he was only at a first-grade level.

“I didn’t agree,” Handy said. “I thought he was capable of much more, and that’s what we actually found out.”

THE FIGHT FOR A DIPLOMA

“One of the first things I did was ask for his textbooks,” Handy said. “I was told he didn’t have any because he was in special ed.” Securing one took three months, she said.

Next, Handy and the Redmonds convinced hesitant school officials to pull Jonathan from special education and give him one-on-one instruction in English and math instead. The officials said, “‘Well, everybody would learn better with one-on-one instruction,’” Handy said. “Yeah, well, not every kid has half a brain.”

They were given three months to prove it could work, and it did. For the rest of Jonathan’s schooling, he had private instruction in core subjects and for the others, he joined his peers in mainstream classes.

The one-on-one time was crucial, Handy said, because concepts had to be presented seven to nine times before Jonathan could apply them. “The effort he had to put out compared to the typical student, it’s just exponential. It’s infinite,” Handy said.

Though he could carry on a conversation and crack jokes, his ability to fully express himself and put his thoughts into context were delayed, too. Said Handy: “I’d say, ‘Tell me about that movie you saw.’ He would say, ‘It was really good, it was really funny.’ ‘What was it about?’ ‘It was about a boy!’”

The physical act of writing was painful; Jonathan would tire after five minutes. “It wasn’t unusual for him to break down and cry,” Handy said. “We would just take a minute and we would get right back to it.”

At Tesoro High School in Las Flores, Jonathan coped with not playing sports and not driving, activities that typically define the teenage experience. He joined student government his senior year and helped plan dances, rallies and the homecoming halftime show.

By the time Jonathan’s senior year drew to a close, he had earned a lot of course credits, but not enough for a diploma. His only option for state-funded schooling was a program that teaches practical skills, such as how to ride the bus, to young adults ages 18-22 with special needs. For Jonathan, that felt like baby-sitting.

Under pressure from the Redmonds, the school district modified the program so students such as Jonathan who were on track to earning their diploma, actually could.

“It’s so important,” Jonathan said of having a diploma. “I want a job. I want to eventually live on my own. I want to make a living.”

‘I’M NOT ASHAMED’

En route to Station No. 9, Jonathan rides in the passenger seat of his neuropsychologist David Lechuga’s car. Top 40 hits blare from the radio as the two laugh about the quarters and dimes Lechuga has lost to Jonathan in bets over whether a fire engine, sirens sounding, is near.

Lechuga mentions he met a special-education teacher recently who has a couple of students who have undergone hemispherectomies, and who are worried about their eyesight and being able to use their hands: “She was very interested in hearing from someone like you.”

“I would love to help parents who have gone through what my parents have,” Jonathan says. “I can do it. I’m not ashamed of this.”